'Having HIV doesn't make you abnormal'

December 1 2009 is World Aids Day. In Brazil despite the country's success in curbing HIV infection rates and almost universal access to treatment, discrimination remains. Rafael, 17, describes to Annie Kelly what it is like to be among Brazil's first generation of people who have always lived with HIV
•World Aids Day gallery

Rafael. Photograph: Eduardo Martino/Save The Children/Department for International Development

'Having HIV doesn't make you abnormal'

December 1 2009 is World Aids Day. In Brazil despite the country's success in curbing HIV infection rates and almost universal access to treatment, discrimination remains. Rafael, 17, describes to Annie Kelly what it is like to be among Brazil's first generation of people who have always lived with HIV
•World Aids Day gallery

Tuesday 1 December 2009 04.00 EST
First published on Tuesday 1 December 2009 04.00 EST

My mum passed HIV onto me when I was four years old. She had my baby brother and because we were poor and she didn't have enough food she breastfed me as well and that's how I got it. I don't blame her though because she didn't know that she was HIV positive and that's just how life goes.

My dad is still alive but he's a gangster and a mean man. He got HIV from sleeping with other women and then gave it to my mum, so in a way he killed her and my baby brother. I don't see him anymore but I don't care because I think he's a dangerous person and I don't want my life to be like his. I want more for myself.

Life got hard for us. My mum realised we were HIV positive when my baby brother got ill really quickly. It was too late for him and because he was small he didn't live for very long. Then my mum got sick and died quite soon afterwards. I don't really remember her at all but, even so, I still think about her all the time.

After my mum died, my grandmother looked after me and then when she passed away, my aunt brought me up so I have always passed from house to house.

Ever since I was a child I've always had to come into hospital but unlike some of the other HIV-positive kids I know I didn't have to go on antiretroviral (ARV) drugs until recently because I was always healthy. Then one day I came in and they told me my CD4 count (T-cell count) dropped so now I'm on the medication, but it isn't too bad. I just have to take pills every day and sometimes I feel tired but otherwise it's fine.

The real problem is people's attitudes because there is such ignorance around HIV and Aids, which makes life difficult for people like me to live normal lives. I used to always be afraid that my friends would discover that I was HIV positive because where I live bad things have happened to people who are found out to have the virus. The best you can expect is that you get rejected and become an outcast where nobody will come near you in your neighbourhood or at school.

It can make you feel like you're totally alone in the world. Sometimes you just think, 'I don't want to live like this'. A few years ago I did think about killing myself. I don't have a mum or a brother because of this virus and I felt I was just waiting to die as well. Like someone was holding a gun to my head the whole time.

Now I feel like that is in the past. There's a group of kids I've grown up with at the hospital and we all go to a project called Pela Vidda where everyone is HIV positive so it's like having a family, we're all like brother and sister to each other. Going there and growing up a bit I've realised that the truth is that having HIV doesn't make you abnormal, it's just like having any other sickness that you treat with drugs.

Recently I've begun to feel sick of living a double life and having to sneak to the hospital and lie. I've started to tell people, my best friends and some of my teachers. A few months ago I told my girlfriend. We've been together one year and I just sat her down and explained and she was completely cool about it. We love each other and she said the important thing was to be honest.

It's not like I'm ready to go around shouting about it, but I feel like I'm changing every year and one day I want to tell more people about my HIV status. It hasn't got to the point where I feel I can be honest with everyone because society is still against people with HIV, but maybe in the future it will be my job to tell other people who are HIV positive not to be scared and to just be themselves and that they don't have to pretend anymore.

One day I hope I can have kids and have a family and I'll know what to do to make sure they have a different attitude than what is out there at the moment, because it's not good to have to hide the truth all the time. It drives you crazy in the end.

• Pela Vidda is a project funded by Save the Children and supported by UKaid from the Department for International Development.